BFS Survey

[KDC]

1. Age ... 53
2. Gender... F
3. Race ... White
4. Length of time you have been twitching? ... 15 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) ... no
6. Do you have any Anxiety or OCD disorders? ... no
7. Any other medical conditions that may be connected to BFS? ... history of Herpies, Mom died of ALS
8. Did you go through the typical ALS scare so common on this forum? ... Oh my God!!! Of course, and I still think about dying of ALS everyday.
9. Body region most affected? ... Calves about 25% of each day. Twitches here and there everywhere else.
10. Most unusual area affected? ... nothing unusual.

I fear dying of ALS daily...after watching my Mom die of it, I think I'd rather die by a bear attack or plane accident, something fast.
How do you get over the fear factor?

[pipergirl]

1. 53
2. F
3. W
4. 3 MONTHS
5. After a 6 mile run in calves
6. No maybe anxious moments at times
7. Ocular Myasthenia Gravis Thyroid replacement
8. My father died of ALS IN 1992.....
9. Calves and thighs mostly
10. Yep...kegal exercises area

[dybowskii06]

1. 30
2. Male
3. Caucasian
4. 5 years
5. no
6. Anxiety disorder
7. Crohn disease
8. YES..
9. Calves, hands
10. ...perineum ...

[Eripsni]

1. Age ... 23
2. Gender... M
3. Race ... White
4. Length of time you have been twitching? ... almost 2 years
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) ... I thought I had MS because of continual muscle spasm that wouldn't go away. Completely freaked myself out - that's when twitching started. It's been my friend ever since.
6. Do you have any Anxiety or OCD disorders? ... I'm sure I have anxiety - I do everytime I think of ALS, at least!
7. Any other medical conditions that may be connected to BFS? ... I did roofing for a number of years and my lower back has never been the same
8. Did you go through the typical ALS scare so common on this forum? ... I still am! Muscle tightness has spread to another area, so I began the freak out cycle. I never had myself tested before, so I'm finally going through the process (finally get to see a neuro in 3 weeks).
9. Body region most affected? ... calves, thighs, feet, arms, i guess pretty much everywhere
10. Most unusual area affected? ... eyelid is irritating, jaw was also interesting...

[Angst1986]

1. Age ... 22
2. Gender... M
3. Race ... White
4. Length of time you have been twitching? ... 2 months.
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) ... started together with a strange cold with unusually high fever. Disease ceased after a week, twitching persisted.
6. Do you have any Anxiety or OCD disorders? ... Yes, I have a high pulse and blood pressure (heart is medically OK), a lot of fear of getting a heart attack or something, panic attacks, etc... All doctors say my vegetative nervous system is out of order.
7. Any other medical conditions that may be connected to BFS? ... Started taking Metoprolol 25mg (because of the blood pressure) several days before twitching started.
8. Did you go through the typical ALS scare so common on this forum? ... Yes, and I'm not done with it yet.
9. Body region most affected? ... Calves and thighs, both legs
10. Most unusual area affected? ... behind the left ear (happened only once)

[mfuher]

1. Age = 39
2. Gender = male
3. Race = caucasian (Lebanese, German)
4. Length of time you have been twitching = since 1/26/09; less than 1 month
5. Was there anything that appeared to trigger the twitching = nothing obvious
6. Do you have any Anxiety or OCD disorders = I don't believe so
7. Any other medical conditions that may be connected to BFS? = morning stiffness in 10 fingers (RA/Lyme/inflammation negative); cervical spinal stenosis a year ago but relieved with disk removal/fusion.
8. Did you go through the typical ALS scare so common on this forum? Yes, I'm a googler and freaked out when I discovered the clinical term for twiching was fasciculation, and googling fasciculation lead to my ALS or general MND scare. In my case, many doctors told me I just needed that 1 more symptom to uncover why I was having morning stiffness, so when the fasciculations started, I thought I was doomed. I had an MRI today and an EMG next week. So the jury is still out on me. I have not yet been diagnosed with BFS, but am hopeful that is what I have.
9. Body region most affected? Left hand in webbing between 2nd/3rd fingers.
10. Most unusual area affected? At same time this started, I'm getting ear stuffiness/fullness (not twitching).

[Ajude]

1. Age = 47

2. Gender = Male

3. Race = Caucasian

4. Length of time you have been twitching? = over 10 years

5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) = It all started 10 years ago about one week after a flu shot but I really do not think the flu shot and twitching are connected although at one time when I did.

6. Do you have any Anxiety or OCD disorders? Yes, anxiety over the twitching

7. Any other medical conditions that may be connected to BFS? None known

8. Did you go through the typical ALS scare so common on this forum? Oh, yes. I had it cubed. It has faded into the shadows of my life.

9. Body region most affected? It has been so widespread I can't really pinpoint a specific spot.

10. Most unusual area affected? Eyeball (currently ongoing) and groin area.

For about a one-two year period (about late '98 to early '00), I was in a panic. As I stated above, the BFS has sort of faded into the shadows of my life with only an occasional recurrence. Back in '98, there was another forum I went to that was either sponsored by the Cleveland Clinic or Harvard Med School (can't remember which). I don't know what happened to that forum but it was a lot like this one.

[neodave]

1. Age = 25
2. Gender = Male
3. Race = Caucasian (from the UK)
4. Length of time you have been twitching? = 7 Years
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) = anxiety
6. Do you have any Anxiety or OCD disorders? = Health anxiety and social anxiety
7. Any other medical conditions that may be connected to BFS? = No.
8. Did you go through the typical ALS scare so common on this forum? = Yes, big time.
9. Body region most affected? = Biceps and legs equally
10. Most unusual area affected? = Groin

[twitchininga]

1. 32
2. Female
3. White
4. 20+ years
5. No, possibly an ischemic attack
6. I had a brief bout of anxiety attacks for a period of about 2 years. But it only seemed to happen during tornado season during a bad couple years ( storm wise) where I live. It went away.
7. No
8. Not really.. having it for so long w/ no other issues made worrying about it being something serious irrational.
9. Thighs, calves and feet- but i think the only part of me not affected are my ears.
10. Well, I've read a couple other responses & I have to agree.. genitalia. But it feels weird in my toungue & scalp too.

[Raymondonz]

Hi New to site.

1. 51
2. male
3. caucasian
4. 11 months
5. No but suspect stress/anxiety
6. as above
7. no
8. n0
9. Calves, arms, torso (all over body really)
10. Eardrum (Ticking/creaking noise inside inner ear)

I also get Burning of knee joints and Limb and body Jerks.

Cheers Raymondo NZ

[twin2]

1. 36
2. Female
3. Caucasian
4. 2 1/2 months
5. No triggers that I am aware of
6. I do have anxiety now. Didn't before that I am aware of.
7. ulcerative colitis
8. Yes!
9. Calves and feet
10. Abs?
Feel free to add more

[britt]

1. Age - 26
2. Female
3. Caucasian
4. Length of time you have been twitching? 15 years
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection)? I was 11 years old when it started, and I do not remember being sick beforehand.
6. Do you have any Anxiety or OCD disorders? Yes, diagnosed with Generalized Anxiety Disorder, Social Anxiety Disorder, and OCD. It seems I developed the OCD at the same time my twitches began.
7. Any other medical conditions that may be connected to BFS? I always get pains in my thighs right above the knees at least once a week. It feels better if I apply pressure/wear a knee wrap or massage them. I do not think I have very good circulation, I always feel the need to stretch.
8. Did you go through the typical ALS scare so common on this forum? Since I was so young when I developed it, I didn't really freak out. I just told my parents and we went to see a neurologist. (Which told me it was due to a growth spurt, by the way...LOL) 15 years later, I don't think I am stil growing!
9. Body region most affected? Feet and calves for sure. Everyday.
10. Most unusual area affected? Scalp and eyeball! Pretty scary!!

[amy_jp]

1. Age - 34
2. Female
3. Caucasian
4. Length of time you have been twitching? 8 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection)? A week and a half earlier, I had a minor surgical/gynecological procedure with general anesthesia. I think that was probably related.
6. Do you have any Anxiety or OCD disorders? No. I've experienced some anxiety in the past, but nothing major -- this condition has probably caused more anxiety than anything else I've experienced.
7. Any other medical conditions that may be connected to BFS? Not sure what is connected -- I've had IBS symptoms off and on for a while. When this started, I also had intermittent dizziness, headaches, and muscle pains. Thankfully that's mostly passed, but I still have periodic tingling/numblike sensations in my hand and foot; isolated muscle twitching (obviously); and, sometimes, momentary bigger twitches or jerks (much more distressing).
8. Did you go through the typical ALS scare so common on this forum? Not really. I didn't experience any weakness and am not demographically at high risk for ALS. But I was certainly scared that something serious was happening -- and that nobody would figure out what it was. I'm still dissatisfied (and a little anxious) at not knowing what exactly is causing this.
9. Body region most affected? Lower legs. Sometimes arms/shoulders.
10. Most unusual area affected? Thumb, abdomen
11. (I'm adding a question here... curious about other people's answers): What seems to make it worse, or better?: worse -- possibly nightshades (I've been advised by a nutritionist to avoid tomatoes, peppers, eggplant, potatoes; that seems to help at least with the tingling); better -- osteopathy (hasn't solved everything, but helped me feel more like myself), self regulation therapy (body-based therapy grounded in neuroscience; helps reduce nervous system activation... huge at reducing anxiety).

[highpriority4]

1. 28
2. Female
3. Caucasian
4. 7 months that I can recall...probably more that I didnt notice
5. not that I remember
6. anxiety
7. not that I know of
8. going through it now UGHHHH!!!!! Reply to my other 2 posts pls so I will stop biting all my nails off!! LOLOL
9. currently my face, used to be my legs, now its all over
10. eyelids, when I close them sometimes they flutter a little

[kphilippe]

1. Age -32
2. Gender -M
3. Race - Caucasian
4. Length of time you have been twitching? - 7 months
5. Was there anything that appeared to trigger the twitching. (i.e. viral infection) - Stress
6. Do you have any Anxiety or OCD disorders? Not that I am aware of
7. Any other medical conditions that may be connected to BFS? Not that I am aware of
8. Did you go through the typical ALS scare so common on this forum? Somewhat, although more concerned about MS
9. Body region most affected? Calves
10. Most unusual area affected? Outer elbow for twitching. Also seem to have an issue with my pinkie toe losing some sensation from time to time.